alsa

  1. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  2. Nikki J

    Stephen Winthrop

    A fellow Mass General patient who was an advocate for PALS and trustee for ALSA. He was a brave and good man who fought a long battle ( diagnosed in 2013). He will be much missed. Deepest condolences to his family and friends
  3. M

    A delayed introduction

    Hello All, I want to first say thank you for taking the time to read this post. I have avoided posting here for about 1 year but due to changes recently I have decided, still with some hesitation, to post. I was going to write more of my history but I do not want to take up your time any more...
  4. S

    Slow progresser (long post)

    Hello to everyone, this is my first post, after spending a lot of time browsing the forums. It seems like a very supportive place. I've noticed in these groups as well as in the local ALSA support group we go to, that some people are dealing with the stress and demands of a fairly rapid...
  5. R

    ALS FDA Trials Guidance Opinion Questionnaire

    This questionnaire was written by individuals with ALS. The results will be used to relay the needs and opinions of People with ALS to the ALS Association and FDA in regards to the recently issued FDA Guidance Document. Please make your voice heard. It will only be open for a few days since...
  6. lgelb

    Rant or something

    "Showing the reality of ALS" in a PSA campaign is a nice idea, but how real is it to portray PALS who have survived 10, 14 and 15 years so far (only ~20% live >5y), respectively, two of whom have trachs, rarely used in the US? Following each vignette with the hyperbolic tagline about having...
  7. lgelb

    ALSA conference live stream

    Is here, going on now.
  8. R

    If you have a passion for ALS advocacy & good public policies, pls join us

    Please join us for something new Feb 13-14, 2018! https://www.morethanourstories.org Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the...
  9. David

    ALSA PSA Appearance and Awareness Opportunity

    On behalf of the The ALS Association and Vitamin Enriched, a real people casting company in NYC, we reach out to PALS and CALS for participation in a public service campaign. We are looking for people who are living with mid to advanced stage Amyotrophic Lateral Sclerosis (ALS), and their...
  10. A

    Experience with Clinics in Los Angeles?

    My mom has a new patient clinic scheduled at UCLA next week. I notice they aren't on the ALSA certified list, although they are on the MDA list. From a few people (ALSA Regional Care Manager + an OT) she's heard that the Clinic at Cedars is quite good. Cedars is ALSA Certified. Any experience...
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